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Affiliation with the Oley Foundation Improves Patient Outcomes

Over the past 30 years, home parenteral nutrition (HPN) has become an established therapy for patients with severe chronic small bowel dysfunction. Patients usually have partial or complete return to normal activity, such as work or school. However, this is an expensive home therapy, especially if the patient has recurrent complications that require hospitalization. For example, hospitalization for a single episode of sepsis is estimated to cost $10,000 to $50,000. In addition, there are costs to the family in terms of stress and forfeiture of earnings. (A family member may lose time from work or even give up a job to care for an HPN patient.) Thus, any intervention that can improve the patient’s quality of life and ability to manage at home — and reduce expensive complications — offers significant benefit to patients, payers and health care professionals.

A review of literature indicates a consistent strong positive relationship between patient outcomes and participation in peer support services for chronic disease. Participation in such a group decreases depression, anxiety, and hospitalizations, and increases self-care and better management decisions with the supporting health care professionals. Studies have also shown that contact with others who have managed a similar condition enhances patients’ self-esteem and sense of well-being.

The following study was undertaken by Carol Smith, RN, PhD, to determine the association between affiliation with an education and peer support organization (the Oley Foundation) and HPN patient outcomes, and is published in the May-June 2002 issue of the Journal of Parenteral and Enteral Nutrition. The effect of affiliation with a national education and peer support organization was evaluated in two separate groups of patients receiving HPN. Group 1 data were collected from programs at large academic medical centers. Group 2 data were collected from small programs to identify whether affiliation with Oley had an effect on outcome regardless of HPN program size and experience with HPN.

In both groups, patients who had an affiliation with Oley were matched with those who had a similar diagnosis, duration on HPN, gender and age — but no affiliation with Oley. When pairing patients, most weight was given to matching their diagnosis since earlier studies have demonstrated that diagnosis is the most predictive factor in HPN outcome. The second most important variable for matching patients was duration on therapy. It was used to control for the patients’ level of experience in avoiding complications. Gender controls were used because there is a greater likelihood of women to join support groups; and age because it has a modest influence on outcomes in patients with stable diagnoses.

The study compared the affiliated and non-affiliated patients’ quality of life, emotional well-being, and rate of catheter-related bloodstream infection (CRBSI). To obtain the data, patients completed the Quality of Life Index, and the reactive depression questionnaire. They were also interviewed by telephone regarding their participation in support groups, contact with other HPN patients, newsletter reading habits, attendance at HPN-related conferences — and whether the services they used were from Oley or other organizations. The occurrence of a catheter-related bloodstream infection (CRBSI) was identified by review of the managing physician’s record and review of blood culture results.

The Results

The investigators found that the primary connection between patients and the Oley Foundation was through the newsletter (approximately 70%), followed by attending a conference and networking with other members (see Table 1). Nonaffiliated patients reported no involvement or activities with other HPN patients across the 18 months. As shown in Table 2, group 1 and group 2 affiliated and non-affiliated patients had similar underlying medical diagnoses. Patients receiving HPN long-term have a high incidence of Crohn’s disease, and this was true of patients in this study; the remaining patients had mesenteric ischemia, radiation enteritis, or a motility disorder. The duration that patients had received HPN was somewhat longer for patients in group 1, but all patients had received therapy for at least 2.9 years. There were more women in both groups and all patients were between 30 and 70 years of age.

Patients affiliated with the Oley Foundation from large and small programs had significantly higher scores on the quality of life index than those who had no affiliation (see Table 3). It should be noted that mean scores fell below 22, the normal score for healthy adults. The reactive depression score was significantly less (better) in both groups of patients affiliated with Oley. The normal score for healthy adults is 0 to 15.5, with mild depression scores 16.0 to 20.5, moderate depression 21.0 to 30.5 and severe depression greater than 31. Patients affiliated with Oley showed none or minimal depression, whereas nonaffiliated patients showed moderate depression. Finally, the recurrence of CRBSI in an 18-month period was significantly lower for patients affiliated with Oley (0.1 infections for affiliated patients, versus 0.6 infections for nonaffiliated patients).

In conclusion, the study showed that patients affiliated with the Oley Foundation have a better outcome, regardless of HPN program size. Specifically, when compared with nonaffiliated case-matched controls, affiliated patients experience a significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis. A limitation of the study’s design is that more positive and self-reliant patients may be more likely to join organizations and may exhibit superior outcomes even if such an organization was not available. Further studies are recommended to rule out this possible limitation.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.